Saturday, February 6, 2016
Saturday, January 30, 2016
Send an EMAIL for FREE membership
>>>>> Help ME Circle <<<<
>>>> 30 January 2016 <<<<
Editorship : email@example.com
By Maryann Spurgin
Longtime ME patient Raymond Colliton died
yesterday of respiratory issues
(bronchitis/-emphysema/ pneumonia). He
Ray was the founder of the Co-Cure project
and also was involved in the ME Society of
Here is a eulogy from his good friend
RAYMOND F. COLLITON
March 10, 1947 - January 29, 2016
"There is no possession more valuable than a
good and faithful friend." ~ Socrates
"If the machine of government is of such a
nature that it requires you to be the agent
of injustice to another, then I say, break the
law." ~Henry David Thoreau
By Maryann Spurgin, Ph.D., ME Society of
It is with great sorrow and sadness that I
must announce the death of my close friend
and our colleague, Raymond F. Colliton,
known to his friends and family as a brilliant,
witty, erudite, kind and giving person, an
entertaining conversationalist, and devoted
to his family.
Ray died peacefully in hospice care on
January 29, 2016, with his loving wife,
Bernice Melsky, at his side. He was 68 years
Ray is known in the ME community as the
owner and manager of the Co-cure project,
an email list serve and (now-archived)
website that kept the community of
researchers and patients informed on the
science and politics of ME for decades.
Ray also did all of the webmaster work on
my "ME Society of America" website.
He spent much time, energy, and money
keeping the ME community informed as well
as helping patients, although he had not
been involved in Co-cure for the last two
years due to illness & retirement.
He kept a very low online / internet profile,
staying out of the limelight and working
behind the scenes.
Ray had a Bachelor of Arts degree in
philosophy; he shared the philosopher's
ongoing questioning of the status quo, and
he flouted anything that stood in the way of
helping his friends and family, knowing that
law and morality were often on opposite
He understood the power structures of the
world, of law, business, and politics.
He was classically educated, studied Latin,
knew politics, history, economics, and
science, and I thoroughly enjoyed his
knowledge on so many things and his
entertaining conversation for many years.
Ray had a sporting, clever sense of humor
and often took hilarious pot shots at my
(many) flaws, which had me in stitches
laughing every time we spoke.
Ray, when young, had planned to become a
Catholic priest; after obtaining a degree in
philosophy, he gave that up to study
finance, and he was a financial whiz.
Prior to becoming ill with ME in 1988, he had
a career in systems administration for a
Fortune 500 company, then went on to
develop his own small business consulting
He had extensive experience in pension plan
and employee benefits plan design and
He was the managing owner of the Co-Cure
Project, a large international information
distribution e-mail list and Web site, both of
which were devoted to science and
advocacy issues surrounding ME.
Ray went into the hospital in Bensalem, PA,
with bronchitis in late December,
complicating his emphysema.
Hospitalization made him worse, he became
weaker, too weak to swallow, he developed
pneumonia & had to have oxygen and a
ventilator in the ICU.
After several weeks of fighting to get better
in ICU, Ray and Bernice made the decision to
move him to the hospice section of the
hospital on January 28.
My heart goes out to his caring wife, Bernice
Melsky, his brother Edward, sisters Margie
and Maggie, daughter Carrie and many other
family members who loved him.
My heart is very heavy because he was one
of my best friends EVER, another close friend
gone too soon.
May his adoring family find peace in
wonderful memories, and may those of us
with ME be grateful for the massive amount
of work he did to help patients as he worked
behind the spolight.
He will live in the hearts of those of us who
Ray, you are missed.
This post was approved by his brother,
Edward V. Colliton, Ph.D. Written by
Maryann Spurgin, Ph.D., long time friend of
the deceased and founder of the ME Society
of America, now archived:
Wednesday, January 27, 2016
Tuesday, January 26, 2016
Sunday, January 24, 2016
The complexity of diagnosing postural orthostatic tachycardia
syndrome: influence of the diurnal variability
Jangsup Moon, MD, PhD1, Han Sang Lee, MD1, Jung-Ick Byun, MD, Jun-Sang
Sunwoo, MD, Jung-Won Shin, MD, Jung-Ah Lim, MD, Tae-Joon Kim, MD,
Yong-Won Shin, MD, Keon-Joo Lee, MD, Daejong Jeon, PhD, Keun-Hwa Jung,
MD, PhD, Soon-Tae Lee, MD, PhD, Ki-Young Jung, MD, PhD, Kon Chu, MD,
PhD, Sang Kun Lee, MD, PhD
1These two authors contributed equally to this work.
Published Online: January 18, 2016
Accepted: January 9, 2016
Received in revised form: December 28, 2015
Received: October 20, 2015
•We evaluated how the diagnosis can be missed in a single orthostatic
•Orthostatic tachycardia is more prominent in the morning, but not always.
•Symptoms were more frequent in the morning, but not during majority
of the tests.
•Orthostatic hypotension can be accompanied in POTS.
•We suggest repeated orthostatic stress tests in clinically suspected
We investigated how the diagnosis of postural orthostatic tachycardia
syndrome (POTS) would be changed due to diurnal variability in
orthostatic tachycardia. The orthostatic vital sign (OVS) test was
administered to each patient twice, in the afternoon of the day of
admission and the next morning (n=113). Forty-six patients were
diagnosed with POTS, and the remaining 67 patients were assigned to
non-POTS group. Heart rate increments after standing were larger in
the morning than in the afternoon in every group (all P < 0.001).
Among the POTS patients, 82.6% fulfilled the diagnostic criteria for
POTS in the morning, and 52.2% in the afternoon. The majority of the
POTS group (65.2%) displayed normal result on single OVS test.
Orthostatic intolerance symptoms were provoked in only 45.7% of the
POTS patients, more frequently in the morning. In conclusion, diurnal
variability in hemodynamic parameters and provoked symptoms
significantly challenged the diagnosis of POTS.
Friday, January 15, 2016
We're pleased to announce that the Free Preview for Forgotten Plague is now available online! Please share with everyone who you think might be interested, from doctors to legislators and everyone in between. We hope you enjoy it! And please be sure to chime in with what you think via social media and directly to us at firstname.lastname@example.org!
The link will be live until Monday evening at 7pm EST (12am GMT)
This version also has English subtitles.
Saturday, December 26, 2015
Likpin cited the findings of their work to date.
- The suspected pathogens don't appear to be the problem (the CII is reportedly looking further at herpesviruses.)
- Evidence suggests altered microbiomes (gut flora) are present
- Striking differences in immune expression between shorter and longer duration patients appear to be present
- Preliminary evidence suggests that levels "X" and "Y" metabolites and, at least, one immune protein are significantly altered in ME/CFS. (Lipkin embargoed this information pending publication of the paper. One of them is highly unusual.)
Lipkin emphasized, though, that ME/CFS is not a one-size fits all disease. For instance, it's possible that fungi may be a problem for some patients. That's an intriguing idea given the recent fungi funding in Alzheimer's disease published in Nature.
Then Lipkin made his bold declaration "We're going to solve this in three to five years", with a big proviso. Provided the resources are made available, he believes science can crack ME/CFS fairly quickly.
Lipkin was at the event to support the Simmaron Research Institute's next spinal fluid study. The results of the first one – the most extensive spinal fluid study ever done in ME/CFS – were eye-opening. A comparison to multiple sclerosis (MS) found evidence of immune dysregulation almost equal to that found in MS. The difference was that instead of being raised, the cytokine levels were reduced in ME/CFS.
That finding surely left a big smile on Lipkin's and Hornig's faces. Earlier they had found evidence of a profound reduction in immune functioning in the blood of later-duration ME/CFS patients. Now a similar reduction was found in their spinal fluid. Having findings in two different systems match has rarely happened in ME/CFS. That suggested they were uncovering system-wide problems.
No wonder Lipkin was eager to begin a new and larger spinal fluid study. It's part of achieving his bucket list.
- See more at: http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/#sthash.FI5MX1L9.dpuf